At five years old, Julianna Snow has already experienced a lifetime worth of pain.
The Oregon girl is dying from an incurable, degenerative neuromuscular disease called Charcot-Marie-Tooth (CMT), which has had her in and out of hospitals for the past 18 months enduring “countless procedures” and spending “weeks at a time trying to breathe,” her mom, Michelle Moon, wrote in a post entitled “My Daughter Wants to Choose Heaven Over the Hospital'” on The Mighty, a website for families struggling with disabilities, serious diseases and life and death issues.
So earlier this year, her parents, Michelle Moon and Steve Snow, asked her what she wanted to do the next time she got seriously ill and needed to go to the hospital.
Their daughter chose heaven, her mom, who also has a blog, wrote on the website.
“A few months after we started hospice, Julianna made it clear to us that she does not want to go to the hospital again,” her mom wrote in May 2015. “Like so many kids who have had to face life-threatening illness, she is wise beyond her years – but she is still only 4 years old.
“I do not think that she will survive another illness, especially without aggressive intervention,” she wrote. “Julianna understands this, too. We have had some remarkable, uncomfortable, humbling conversations about heaven.”
Last month, it was this:
Before these conversations, Michelle says she and Steve had planned to take Julianna to the hospital if she got sick again. But after hearing Julianna’s wishes, they changed their minds, Michelle told CNN in an email.
“She made it clear that she doesn’t want to go through the hospital again,” Michelle wrote. “So we had to let go of that plan because it was selfish.”
Michelle wrote a second column in early June explaining more about their decision.
“Julianna talks about the hospital – a lot,” she wrote. “Usually about how much she hates it. I tried to remind her of all the wonderful people who helped her.
“We hate all the NT [naso-tracheal suction, the thing she hated the most from the hospital],” she wrote, “and pokes too – but they killed the germs and let her come home so didn’t that make it OK?
“We had this conversation many, many times,” she wrote. “Julianna wouldn’t say anything, One night in early February, she finally answered. She said “no.” And then she started talking about heaven.
While some ethicists disagree with their decision to listen to their daughter, according to CNN, Julianna’s doctor supports them, he told CNN.
“For her, there is no light at the end of the tunnel,” Danny Hsia, her pulmonologist says, told CNN. “She doesn’t have a long time to live.”
VIDEO: Brittany Maynard’s Legacy: One Year Later
When Julianna gets another infection, the hospital will likely not be able to save her, he told CNN.
Diana Scolaro, the nurse who took care of Julianna through three stays in the intensive care unit, also supports Steve and Michelle’s decision.
“You have to know what it’s like to hold down a child and hear them scream so you can stick a tube down their nose,” she told CNN.
“It’s one thing to do that when you know you’ll have a success at the end, but for Julianna, there is no success,” she added. “We pulled her from death’s door so many times last year, but she’s sicker now than she was then, and I don’t think we could pull her through another big crisis.”